Finding a Celiac-Literate Doctor

Not all doctors understand celiac disease. Some are excellent; others think it’s a fad or dismiss ongoing symptoms as anxiety. Finding a doctor who actually knows what they’re talking about makes everything easier.

Here’s how to find one, and how to know if you need to switch.

Why It Matters

A good doctor will:

• Take your symptoms seriously
• Order appropriate follow-up testing
• Help you troubleshoot if you’re still not feeling better
• Know current research and guidelines
• Connect you with dietitians and other specialists

A bad doctor will:

• Dismiss ongoing symptoms
• Not follow up after diagnosis
• Suggest you can “cheat a little”
• Know less about celiac than you do after three hours on Google

You don’t want to fight your doctor. You want a partner in your health.

The Ideal Specialist

The gold standard for celiac care is a gastroenterologist (GI) who specializes in celiac disease, or at least has significant experience with it.

Academic medical centers often have dedicated celiac clinics or GI doctors with celiac expertise. If you live near a major hospital or university medical center, check their GI department’s website for celiac-specific information.

How to find one:

• Search “celiac center” + your city
• Check the Celiac Disease Foundation’s healthcare provider directory
• Ask in local celiac support groups for recommendations
• Call your insurance and ask for GI doctors specializing in celiac

If a Specialist Isn’t Available

Not everyone has access to a celiac specialist. Rural areas, insurance limitations, long wait times, there are real barriers.

In this case, your best bet is a general gastroenterologist who:

• Diagnosed you correctly
• Follows evidence-based guidelines
• Is willing to learn what they don’t know
• Takes your symptoms seriously

A good generalist who listens is better than a specialist who doesn’t.

Red Flags in Your Current Doctor

Consider finding a new doctor if yours:

• Doesn’t order follow-up blood work. Your antibody levels should be monitored, especially in the first year.

• Suggests you can have “a little” gluten. There is no safe amount for celiacs. Any doctor who says otherwise is dangerously misinformed.

• Dismisses ongoing symptoms. If you’re strictly gluten-free and still sick, there’s a reason. It might be hidden gluten, a related condition, or something else, but it’s not “in your head.”

• Doesn’t discuss associated conditions. Celiac is linked to thyroid problems, osteoporosis, other autoimmune diseases. A good doctor screens for these.

• Seems less informed than you. You’ve been reading about this for months. If your doctor seems surprised by basic celiac information, that’s a problem.

• Makes you feel dismissed or crazy. Trust your instincts here.

Questions to Ask a Potential New Doctor

When you’re evaluating a new GI or primary care doctor:

1. “How many celiac patients do you currently treat?”
2. “What’s your approach to follow-up care after diagnosis?”
3. “How do you handle persistent symptoms in someone who’s strictly gluten-free?”
4. “What associated conditions do you screen for?”
5. “Are you connected to any dietitians who specialize in celiac?”

Their answers will tell you whether they’re equipped to help you.

The Dietitian Question

A celiac-savvy registered dietitian is as important as a good doctor, maybe more so in the first year.

They can:

• Review your diet for hidden gluten
• Help you plan nutritionally complete meals
• Troubleshoot why you might still be reacting
• Teach you about cross-contamination
• Support the emotional side of dietary change

Ask your doctor for a referral. If they can’t recommend anyone, the Celiac Disease Foundation and Academy of Nutrition and Dietetics have directories.

Working with a Reluctant Doctor

Sometimes you’re stuck with a doctor who isn’t ideal, insurance limitations, location, no alternatives.

Strategies:

• Come prepared. Bring articles from reputable sources (Celiac Disease Foundation, academic journals). Some doctors respond better when you present information professionally.

• Ask specific questions. Instead of “Why don’t I feel better?”, try “Can we test my tTG-IgA levels again to check healing?”

• Advocate clearly. “I’m concerned because [specific symptom]. I’d like to explore [specific test or referral].”

• Bring backup. A spouse or friend in the room can help you feel less dismissed and remember what was said.

• Know when to walk away. If they’re actively harmful (telling you gluten is fine, ignoring serious symptoms), it’s worth the hassle of switching.

Telemedicine Options

Celiac specialists increasingly offer telemedicine appointments. This can be a lifeline if you don’t have local options.

Check:

• Major celiac centers (University of Chicago, Columbia, Beth Israel) for virtual options
• Telehealth platforms that connect to specialists
• Your insurance for out-of-area specialist coverage

A yearly or twice-yearly virtual appointment with a celiac expert, combined with a local primary care doctor for routine stuff, can work well.

What Good Care Looks Like

Here’s what you should expect from quality celiac care:

At diagnosis:

• Explanation of the disease and what it means
• Referral to a dietitian
• Initial blood work and possibly endoscopy
• Discussion of genetic testing for family members if relevant

In the first year:

• Follow-up blood work (usually at 3-6 months, then 12 months)
• Monitoring of symptoms
• Nutritional assessment (checking for deficiencies)
• Accessibility for questions

Ongoing:

• Annual blood work (tTG-IgA)
• Periodic check-ins
• Screening for associated conditions (thyroid, bone density, other autoimmune)
• Adaptation as your needs change

If you’re not getting this, you deserve better.

You Deserve to Be Believed

Celiac disease is real. Your symptoms are real. Your need for strict dietary compliance is real.

A good doctor knows this. They partner with you. They take you seriously.

If your current doctor doesn’t, keep looking. The right one is out there, and they’ll make your life with celiac significantly easier.